Wouldn’t it be NICE to consider patients’ views when rationing health care?BMJ 2009; 338 doi: https://doi.org/10.1136/bmj.b85 (Published 26 January 2009) Cite this as: BMJ 2009;338:b85
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The authors may be right in arguing for NICE to take more account of patients' views, but they do not help their cause by championing Exubera, the inhaled insulin.
Exubera was only available in short-acting form, so patients using it would need at least one injection of long-acting insulin daily too. Also, everyone using insulin would still need to do regular blood testing by skin-prick. Thus Exubera is of little use for needle phobics.
Exubera had been shown to cause a decline on lung function in some patients using it. Also, there had been more lung cancers in patients on Exubera than controls (though the number were too small to say if this was significant). No one knew what Exubera might do to the lungs in the long-term. I saw this worry as a strong reason not to prescribe it when safe alternatives already existed. Clearly other doctors and patients agreed, because Pfizer withdrew Exubera in 2007 due to poor sales, not because anyone had banned it.
NICE very sensibly pointed out these drawbacks, but still recommended the use of Exubera for patients with "a marked and persistent fear of injections" or "severe and persistent problems with injection sites" if other treatments were not suitable - hardly a ban.
(2) NICE guidance
Competing interests: No competing interests
The problem with NICE, and much other NHS policy-making, is it
becomes dominated with advocacy groups. This leads to distorted
priorities, exaggerated estimates of need and wasted resources.
This is inevitable with Secondary Care and Pharmaceutical Industry
input, but need not be from non-specialist health professionals or members
of the public.
Usually members of the public and generalists are chosen from those
with a "special interest" in the issue under review. This is wrong.
If NICE is reviewing epilepsy they should have advice from a GP with
a special interest in diabetes and the mother of a teenager with
If NICE are reviewing schizophrenia they should have advice from a GP
with a special interest in asthma and a daughter whose father has
Thereby sense might prevail in resource allocation and priority
Millions of pounds are wasted (and no doubt much disease -mongoring
harm done) with some aspects of the GP Quality and Outcomes Framework.
This is because it was written by "experts" who took no global view on
resource allocation or actual real needs in the real world. Epilepsy and
asthma stand out - most "patients" are happy healthy, working, striving
people with mild stable disease who gain nothing from being ignominously
frogmarched in for an annual review.
If we had a more balanced group advising on policy and guidelines we
would have less waste, less medicalisation and less frustration among the
many of us who just waste valuable professional time but make money on the
Competing interests: No competing interests
Speight and Reaney ask ‘Wouldn’t it be NICE to consider patients’
views when rationing health care?(1) While this is a perfectly legitimate
question to ask, it is disappointing that the authors have answered the
question by drawing on factual inaccuracies. In an attempt to generate a
more objective discussion of the very real and difficult issues that are
raised by the work of an organisation like NICE, we address the
inaccuracies in their paper.
The authors state that cost effectiveness is only one of several
criteria that need to be considered when health care is rationed, a
position that NICE explicitly supports. But the authors are incorrect in
arguing that the NICE process ‘accounts only for costs to the NHS, and it
doesn’t consider the patients’ perspective’. Recognizing that information
on the patient perspective is often missing from clinical trials and other
sources of published research evidence, NICE has made concerted efforts to
find a range of additional means to ensure that the patient perspective
informs its processes and committee decision making:
• Each branch of the Appraisal Committee includes three lay members
recruited through open advertising. Appraisal committee lay members come
from a range of backgrounds and many of them have worked at Chief
Executive or Senior policy office level in national patient organisations.
They bring their understanding of patient perspectives and the issues that
patients consider important to the challenging task of carrying out NICE
• National patient and carer organisations that represent the
interests of people with the condition can become consultees to an
appraisal, providing opportunities to contribute at key stages of the
- Active participation at scoping workshops: a range of consultee
organisations (professionals, patients and industry) meet at NICE to
provide advice on the remit of the appraisal and identify key issues
relevant to their constituency groups
- Submission of written evidence: NICE’s guide for patient organisations
(2) describes the kind of information that it considers useful as
‘experience of living with the condition and the impact of a technology on
a patient’s symptoms and physical and psychological well being, as well as
what it might be like to live without the technology’
- Nomination of patients (or carers) with experience of the condition who
are invited to attend the appraisal committee meeting alongside clinical
experts: patient experts provide the committee with personal descriptions
of the positive and negative impacts of both the condition and the
technology being appraised on a range of factors including clinical
outcomes and quality of life. These contributions provide the committee
with information on patient perspectives that may not be available from
the published research evidence or the views of the clinical experts.
- Consultation on the draft guidance produced by the appraisal committee:
an opportunity to identify how patient perspectives might influence the
committee’s discussion and development of the final recommendations.
The authors also suggest that NICE relies on generic measures of
health status such as the EQ-5D without considering other patient reported
outcomes. The authors have made a flawed assumption that NICE decision
making is based on the EQ-5D alone. The opportunities for patient
involvement described above provide examples of how NICE uses alternative
routes to ascertain what outcomes patients consider important. And in
some instances, the nature of an illness has indicated a need for the NICE
appraisal committee to consider alternatives to the EQ-5D because it did
not adequately reflect important dimensions of health status for the
condition in question.
The authors also state that NICE’s ‘unofficial cost effectiveness
threshold range for
funding a treatment is £20 000 ( 22 00; $31 000) to £30000 per QALY’ This
over simplistic description of NICE’s position which the authors could
avoided by referring to the NICE guide to the methods of technology
appraisal (3). The production of this guide involved extensive input from
and consultation with a wide range of stakeholders, including patient
organisations and patient representatives. The guide explicitly states
that ‘The Appraisal Committee does not use a precise ICER threshold above
which a technology would automatically be defined as not cost effective or
below which it would’. The guide then provides more detailed advice to
its committee on how to deal with ICERs below £20,000, between £20 ,000
and £30,000 and above £30,000
There is no doubt that the role of NICE raises both ethical and
methodological questions about how best to allocate resources to patients
within a resource limited health service. And it is both understandable
and appropriate that there should be debate about how the very difficult
decisions made by a body like NICE are taken.
But criticisms should be based on valid observations not an
oversimplification or inaccurate portrayal of the process. We believe that
the new investigation into how to assess the ““value” of innovation
chaired by Sir Ian Kennedy recently announced by NICE will contribute to
this debate (4)
Dr. Marcia Kelson, Associate Director, Patient and Public Involvement
Dr. Carole Longson, Director, Centre for Health Technology Evaluation
Professor Peter Littlejohns, Clinical and Public Health Director
National Institute for Health and Clinical Excellence
(1)Speight J, Reaney M. Wouldn’t it be NICE to consider patients’
views when rationing health care? BMJ 2009;338:b85
(2)National Institute for Health and Clinical Excellence. A guide for
patient/carer groups – contributing to a technology appraisal. 2004,
(3)National Institute for Health and Clinical Excellence. Guide to
the methods of technology appraisal. 2008, pp 58-59.
Competing interests: No competing interests